Hi

Our daughter is Mary, 30 months. Two Sundays ago her nanny brought her in after some robust playing reporting that Mary was stubling around. We thought she had injured herself. Search as we may, there were no swellings, wounds or pain - and then suddenly Mary got up and started playing again.

The next day, Monday, the limping came and went throughout the day and we attributed this to some natural healing cycle. Same thing on Tuesday and it appeared to manifest itself when she played for a while. That same evening she had a 37.5 degree fever so the next morning we headed for the Pedia. He diagnosed a Viral Myasotis and put Mary on a Paracetamol regimen.

Thursday afternoon Mary lost control of her right arm and leg and her limp was at its worst. She was, however, strugling to play still. Her arm lifted up, bent at the elbow and twisted inward. Her inex finger straightened and the rest curled inward. she was wobbly on her feet but still moving around. She got into a tantrum but would only shout.


Mary, before this event, was able to articulate the things that she wanted. I think her vocobulary was normal and would talk and sing. She was super active and energetic - very inquisitive. loved to jump and dance around. Watched her shows, was showing interest in picture books and could certainly use a crayola. But now she was all weepy, cranky and given to tantrums.


We rushed her to the hospital and the ER pedia ordered a blood test and immediately called a Nero-Pedia. She (the Neurological Pedia) was the one who noticed, what she called a "stroke gait" and ordered an MRI and MRA scan looking for Stroke Evidence. She also insisted that Mary's scans were to be read by several Radiologists and Specialists. She was ruling out everything – tumors, lesions, trauma, and what have you. Our Neuro-Pedia is also working a bit blind. Mary is our adopted child and we cannot provide a genetic medical history for her.


The results are in and Mary is negative for trauma, cysts, tumors, lessions, stroke evidence and given a clean bill of health as far as her arteries are concerned. so it must be epilepsy


Our Neuro-Pedia is actually a specialist in childhood Epilepsy and was so cautious and conservative in both the diagnosis and medication. She took much time to talk and explain to us; visit, test, observe and diagnose Mary. She is in constant contact with us and our original Pedia. We are far from over as far as test go. Two days from now we have a blood test and soon another EEG. Therapy is still on hold. She wants us to update her for even the slightest change in Mary's behavior. We are instructed not to hold back any observation.


mary has now medicated for two days of 5mg Topomaxx. She explained the limitations the medical field had on seizures and epilepsy in general. What she showed us were her case files. Here there were so many parallels to Mary’s experience. Most children were in worst shape when they were first diagnosed by our Neuro-Pedia and a great many of them are now all normal functioning epileptics.


Mary is now so wobbly on her feet. She struggles and favors her left hand and foot. she will not stand on her right and still limps on and off. Her walk is not the same. She, however seems to have regained a bit of her former self. she smiles more often and allows us to cuddle her. Her inquisitiveness has returned but is also matched by her tantrums due to frustration - she cannot do the things she used to do...and I think she knows it. Her naps are shorter and her night's sleep is fitfull. She is talking and sometimes laughing in her sleep.

It has been so hard to see our baby this way. As a couple we do not possess many things and have chosen the simplest kind of life. We have learned to value and enjoy what we have. We never ever complain - it’s just that our hearts are breaking. Mary is the heart of our hearts.

Thank you,

Rene and Marilen Estaniel